Overview

One of the key
concerns of dying patients that needs to be supported is their spirituality.
The need for attentiveness to patients spiritual concerns has been
well recognized by many authors, some of whom are included for reference
(Conrad 1985, Moberg 1982, Byrne 1979, Gartner 1991, Larson 1991, Moberg
1965, Poloma 1991). The term "spirituality" has been used in
different ways by different authors (Burkhardt 1989). A broad, inclusive
definition is: spirituality is that which gives meaning to one's life
and draws one to transcend oneself. Spirituality is a broader concept
than religion, although that is one expression of spirituality. Other
expressions include prayer, meditation, interactions with others or nature,
and relationship with God or a higher power. Spirituality was cited as
integral to the dying person's achievement of the developmental task of
transcendence and important for health care providers to recognize and
foster (Highfield. Mudd, Millson 1992): "The physician will do better
to be close by to tune in carefully on what may be transpiring spiritually,
both in order to comfort the dying to broaden his or her own understanding
of life at its ending"(Leighton 1996).

Some spiritual
identifiers that one could assess in patients in the last month of life
are: 1) is there purpose to their life as they suffer, 2) are they able
to transcend their suffering and see something or someone beyond that,
3) are they at peace, 4) are they hopeful or do they despair, 5) what
nourishes that sense of value of themselves: prayer, religious commitment,
personal faith, relationship with others, 6) do their beliefs help them
cope with their anxiety about death, with their pain, and with achieving
peace. Finally, one needs to assess how well the patient's spiritual needs
are being met: 1) do the health care providers listen to their beliefs,
faith, pain, hope or despair, 2) are they able to express or develop their
spirituality through prayer, art, writing, reflections, guided imagery,
religious or spiritual readings, ritual, or connection to others and God.

Literature
Review

A literature review
of the Medline, Cancerlit and Bioethics database was conducted with the
search terms spirituality, spiritual, religiousness, religious, religiosity,
transcendence, quality of life and palliative care or terminal care. In
addition, the psychology search program on Aladdin was used to find specific
articles on religiousness measures. In addition we received articles from
studies conducted by Dr. L VandeCreek. We found 74 articles published
between 1967 and 1997.

I. Listing
of Potential Instruments

Based on review
of these 74 articles, we found 25 potential instruments for consideration.
These are divided into four groups of scales which measure: 1) quality
of life, 2) attitudes, 3) religiousness, and 4) spirituality.

1. Quality
of Life

Nine of these
are quality of life measures which are mostly functional. Some of these
have two or three questions related to spirituality. However, for the
most part they are functional assessments and therefore will not be described
in depth here but just listed:

a. Death
Attitude Profile (Gesser 1987): A 21 item self-administered questionnaire
for administration to a general population.

b. Life Attitude
Profile: a 36 item multidimensional profile developed and tested in a
college population and more recently in hospitalized patients and out
patients. This is an excellent instrument for assessing spiritual needs
but may need to be modified for a terminally ill population.

c. McCanse Readiness
for Death Instrument (McCanse 1995): a 28 item structured interview questionnaire
tested and verified in a terminally ill population. Four conceptual categories
are included: withdrawal from internal and external environment, decreased
social interaction, increased death acceptance behaviors and increased
admission of readiness to die.

e. Purpose in
Life Test(PIL) (Crumbaugh 1964): a 20-item attitude scale with emphasis
on the need for purpose and meaning in life. Used in patients with acute
leukemia in the later stages of their disease. This was developed to test
the concepts of logotherapy developed by Victor Frankl.

f. The Seeking
of Noetic Goals Test (SONG) (Crumbaugh 1977): a 20-item scale which assesses
the respondent's motivation to find additional meaning in his or her life.

3. Religiousness

a. Religious coping
scale (Pargament 1990): a 50-item scale with religious and spiritual as
well as non-religious, more psychological coping activities tested in
a Christian church population. The authors make some conclusions as to
what type of religious coping mechanisms are helpful in difficult situations.

b. Religious Orientation
Measure (Allport 1967): a 20-item self-administered questionnaire measuring
the extrinsic (religion as a means to self-serving ends) and intrinsic
(religion as an end in itself) dimensions of respondents. This is an extremely
well-tested and widely used scale in many different populations used to
assess religiousness.

c. Quest scale
(Batson 1991): a 12-item self-administered questionnaire introducing a
third dimension to religiousness in addition to intrinsic and extrinsic:
the quest dimension with questions related to life's meaning, meaning
of death, and of others. This was tested in a college-aged population
and used in the general population, but not specifically in hospital populations.

d. The Religiousness
Scale (Stryhorn 1990): a 12-item self-administered scale tested and verified
in families of head-start children and subsequently used in the general
population, including hospitalized and out patients. A good scale for
determining the nature of a person's religion: their commitment, level
of participation in their religion and relationship with God.

e. Religious Coping
(Koenig 1992): a 3-item index given by interview; each item measures how
much the patient relied upon religion to help manage emotional stress
associated with an illness. Tested in a VA population of geriatric males
and used in studies on depression.

4. Spirituality

a. Spiritual
Well-Being Scale (Paloutzian 1982): a 20-item self-administered scale
with two dimensions: religious and existential. Tested in a college population.

b. Death
Transcendence Scale (VandeCreek 1993, Hood 1983): a 25-item self-administered
scale based on the premise that "death is transcended through identification
with phenomena more enduring than oneself." This scale has been tested
in a diverse adult sample including the hospital setting..

c. Meaning
in Life Scale (Warner 1987): 15-item administered by interview, tested
in a facility for the chronically and terminally ill. The intent is for
the patient to report his or her assessment of the worth of life remaining.

d. Herth
Hope Index (Herth, 1990): a 12-item interview containing three dimensions:
temporality and future, positive readiness and expectance, and interconnectedness.
Tested on family caregivers of terminally ill people and terminally ill
persons aswell as in community and hospital patients and family members.

e. Index of Core
Spiritual Experiences (INSPIRIT) (Kass 1991): an 18-item interview scale
used for spiritual assessment in general population as well as hospital
patients.

f. Spiritual
Perspective Scale (Reed 1987): a 10-item structured interview or questionnaire
format administered in healthy and terminally ill adults shown to be reliable,
accurate and relevant in those populations.

g. FACT-Sp (Fitchett
1996): a 12-item scale that can be used alone or with the FACT-G, a general
measure developed for cancer patients. Items examine faith and sense of
purpose and meaning in life.

i. Conceptual
and Measurement Model (Does the scale represent a single domain or do
model scales measure distinct domains? Is the variability of the scale
reported? If so, please document it. What is the intended level of measurement,
i.e. ordinal, interval, ratio or category?)

The ML scale is
a 15-item interviewer administered scale used for reporting the patient's
assessment of the worth of life remaining. There are a number of measures
used to rate a patient's satisfaction with life, work etc. The ML scale
was designed to reach beyond the dimensions or domains covered by life
satisfaction and life measures. The authors define meaning in life as
"centered in a sense of purpose, beliefs and statements of faith."
The scale was developed in a four phase project using the following groups:
patients suffering from chronic disease, patients with a terminal illness,
relatives, and health professionals. It was finally tested in a group
of 224 residents of facilities for the chronically ill, 61 terminally
ill patients, and 59 renal dialysis and myocardial infarct patients. It
has been referenced in a number of articles on Spiritual Assessment.

The scale consists
of both positive and negative items. For the analysis the negative items
were recoded so as to correspond to the positive ones. The scores for
the items range from 1, a low negative meaning, to 5, a high positive
meaning. Responses were on the positive side of the rating scale but there
were clusters of low scores as well.

Internal consistency
was assessed: Cronbach alpha was acceptably high (0.78). The test- retest
correlations ranged from 0.27-0.58: 5 of the 15 items had stability correlations
of 0.40 or less. It was not clear why this was so but the authors agreed
these would need further examination.

iii. Validity
(How did they address content reliability? Any information on construct
related validity? Any information on criterion validity?)

Correlation matrices
were obtained for the ML with other measures. The ML correlated in predicted
ways with other scales (pain, social support, activity). Construct validity
of this scale is further discussed in a doctoral thesis (Warner, SC "The
Measurement of Subjective Variable in Epidemiology: Development and Validation
of an Instrument for Quantifying Self-Perceived Meaning in Life among
the Chronically Ill Institutionalized Elderly." Ann Arbor, Michigan:
The University of Michigan, 1986.)

iv. Responsiveness
(Any information? Has the scale ever been used as an outcome measure?
If so, what populations?)

No information
available.

v. Interpretability
(What populations has it been applied to? Is the score translated into
a clinically relevant event? Does the score predict outcome events?)

It has been used
in the elderly, chronically ill and terminally ill population, but studies
have yet to be done to show that their meaning in life can be modified
in response to palliative care.

vi. Burden
(Any information on cost or time to administer? Does the instrument impact
on the respondent? How long does a survey take to complete? Response rates?
Any problems with the missing data?)

The scale is short
and easy to administer. It is acceptable to clinicians and patients. It
is not highly influenced by socially desirable responses.

vii. Alternative
forms (What are the modes of administration? Alternatives? If an alternative
exists, provide what is known for each of the above categories.)

A visual analog
version called the Meaning in Life Uniscale was developed and tested as
well. The distribution, means, and standard deviation for the two testings
of this scale were nearly identical. The ML however was noted to be more
stable over two testings(0.73) than the uniscale (0.59).

viii. Cultural
and Language Adaptations (any information?)

It has been translated
into French and back into English to test the compatibility of content.

i. Conceptual
and Measurement Model (Does the scale represent a single domain or do
model scales measure distinct domains? Is the variability of the scale
reported? If so, please document it. What is the intended level of measurement,
i.e. ordinal, interval, ratio or category?)

A 20-item self-administered
scale designed to measure spiritual well-being in both its religious (RWB)
and existential (EWB) senses. Two subscales are included: 1) RWB, 10 religious
items contain a reference to God; 2) EWB, 10 items with no reference to
God. In order to control for response-set problems, half the items from
each subscale were worded in positive and negative directions.

iii. Validity
(How did they address content reliability? Any information on construct
related validity? Any information on criterion validity?)

The SWB scale
appears to have sufficient validity for use as a quality of life indicator.
SWB scores correlated in predicted ways with several other scales. People
who scored high on SWB tended to be less lonely, more socially skilled,
high in self esteem and more intrinsic in their religious commitment.
The SWB, RWB, and EWB all correlated positively with the Purpose in Life
Test. It has been used to assess spiritual well being in chronically-ill
adults.

iv. Responsiveness
(Any information? Has the scale ever been used as an outcome measure?
If so, what populations?)

The scale has
been used to assess the relationship between loneliness and spiritual
well- being in a college populations as well as chronically ill patients.
In a study comparing loneliness and spiritual well-being in a healthy
versus chronically ill population it was shown that there was a negative
correlation between loneliness and spiritual well-being. The ill group
also had high SWB and RWB scores than the healthy but similar EWB scores.
The authors concluded that chronic illness may be a factor in stimulating
the person's valuing religion, having faith in God, and having a relationship
with God. No studies on impact of an intervention (eg. chaplain referral)
were done.

v. Interpretability
(What populations has it been applied to? Is the score translated into
a clinically relevant event? Does the score predict outcome events?)

Higher scores
indicate spiritual well being and are correlated with less loneliness
on the UCLA Loneliness Scale (p 0.06). People who espoused the personal
religious commitment score higher on SMB, RWB, and EWB (p 0.01).

vi. Burden
(Any information on cost or time to administer? Does the instrument impact
on the respondent? How long does a survey take to complete? Response rates?
Any problems with the missing data?)

The chronically
ill patients were able to answer the 20 questions by themselves without
difficulty. No other information available.

vii. Alternative
forms (What are the modes of administration? Alternatives? If an alternative
exists, provide what is know for each of the above categories.)

i. Conceptual
and Measurement Model (Does the scale represent a single domain or do
model scales measure distinct domains? Is the variability of the scale
reported? If so please document it. What is the intended level of measurement,
i.e. ordinal, interval, ratio or category?)

A 10- item self-administered
or structured interview formatted scale which measures persons' perspectives
on the extent to which spirituality permeates their lives and they engage
in spiritually-related interactions. Participants respond to items based
on their understanding of spirituality. Responses to each item are selected
using a Likert scale of 1 to 6. Descriptive words correspond to each number.
It is scored by calculating the arithmetic mean across all items. Scores
range form 1 to 6 with 6 indicating the greater spiritual perspective.

Cronbach's alpha
coefficient ranged from 0.93 in the hospitalized but not terminal patients
to 0.95 in the hospitalized terminal patients and healthy patients. Test-retest
reliability ranged from 0.57 to 0.68.

iii. Validity
(How did they address content reliability? Any information on construct
related validity? Any information on criterion validity?)

Evidence for construct
validity was found in the study sample in that those who reported having
a religious background scored higher on the SPS. Qualitative data generated
by open- ended questions also indicated the validity of the SPS for participants
in the study.

iv. Responsiveness
(Any information? Has the scale ever been used as an outcome measure?
If so, what populations?)

The psychometric
properties of this instrument have remained adequate in research on adults
of various health conditions including the terminally ill, healthy and
non-seriously ill adults. The results of the studies show that terminally-ill
adults indicated greater spirituality than both hospitalized non-terminally
ill adults and healthy adults. No intervention has been tested.

v. Interpretability
(What populations has it been applied to? Is the score translated into
a clinically relevant event? Does the score predict outcome events?)

vi. Burden
(Any information on cost or time to administer? Does the instrument impact
on the respondent? How long does a survey take to complete? Response rates?
Any problems with the missing data?)

The respondents
completed the 10 item questions in interview format. The open-ended questions
on change in spiritual views (not part of the scale) were asked after
the completion of these 10 questions. Twenty to sixty minutes were required
to complete all questions. Terminally-ill patients were particularly interested
in expressing their views at the end of the study.

vii. Alternative
forms (What are the modes of administration? Alternatives? If an alternative
exists, provide what is known for each of the above categories.)

i. Conceptual
and Measurement Model (Does the scale represent a single domain or do
model scales measure distinct domains? Is the variability of the scale
reported? If so, please document it. What is the intended level of measurement,
i.e. ordinal, interval, ratio or category?)

A 25-item self-administered
questionnaire designed to test what ways respondents use to transcend
death, with five subscales or modes: religious, mystical, biosocial, creative
and nature. There are five items per mode except for biosocial, which
contains three items. The items are answered on a Likert scale (1=strongly
disagree, 4=strongly agree). Scores of each subscale describe the level
of investment attributed to them by the respondent.

Cronbach's alpha
was 0.74 ranging from 0.79 for the religious subscale to 0.51 for the
nature items.

iii. Validity
(How did they address content reliability? Any information on construct
related validity? Any information on criterion validity?)

Correlations to
the depression, self-esteem and hope scores showed that religious scores
were correlated with all these results, most strongly with hope (r=0.43).
So DTS measurement of life after death in the religious sense was influenced
by such factors as depression, self-esteem and hope. The scores on the
religious subscale were related to the marital status of the respondents
(p=0.05), as well as to their religious heritage (p=0.000) and pattern
of attendance (p=0.000). Nature subscale scores were lower in the urban
population as compared to the rural.

iv. Responsiveness
(Any information? Has the scale ever been used as an outcome measure?
If so, what populations?)

The scale has
been used in a diverse population of adults including hospitalized patients
but not in the terminally ill. The study was undertaken to gather information
on how the patients' search for immortality can assist in providing pastoral
care. 86% of respondents believed in life after death. Results indicate
that people seek to transcend death through their relationship and influences.
The scale is able to explore these desires.

v. Interpretability
(What populations has it been applied to? Is the score translated into
a clinically relevant event? Does the score predict outcome events?)

This has been
applied to adult in- and out-patients. Studies suggest the need for pastoral
intervention in patient care as well as with their families.

vi. Burden
(Any information on cost or time to administer? Does the instrument impact
on the respondent? How long does a survey take to complete? Response rates?
Any problems with the missing data?)

No information
available.

vii. Alternative
forms (What are the modes of administration? Alternatives? If an alternative
exists, provide what is know for of the above categories.)

i. Conceptual
and Measurement Model (Does the scale represent a single domain or do
model scales measure distinct domains? Is the variability of the scale
reported? If so, please document it. What is the intended level of measurement,
i.e. ordinal, interval, ratio or category?)

A 21-item self-administered
or interview administered scale with four dimensions: fear of death, escape
acceptance, approach acceptance, and neutral acceptance. These were tested
as four relatively independent death-attitude dimensions. Participants
rate each item by means of a five-point agree-disagree, Likert-type scale.
Items identified as loading substantially were given unit weights; raw
scores were summed to generate subscale scores.

iii. Validity
(How did they address content reliability? Any information on construct
related validity? Any information on criterion validity?)

Fear of Death
was negatively related to happiness as expected (p 0.001) and positively
related to hopelessness (p 0.05). Results failed to support the predicted
relationship between Approach-oriented Death Acceptance, and happiness
and hopelessness. As expected, Escape-oriented Death Acceptance was positively
related to hopelessness but unrelated to happiness. Neutral Acceptance
was unrelated to hopelessness but positively related to happiness. This
scale has not been used in a terminally-ill population.

iv. Responsiveness
(Any information? Has the scale ever been used as an outcome measure?
If so, what populations?)

Not used as an
outcome measure to date. Used to assess differences in death attitudes
across the life span.

v. Interpretability
(What populations has it been applied to? Is the score translated into
a clinically relevant event? Does the score predict outcome events?)

Not used in clinical
settings. Authors infer that the young and middle-aged may have a harder
time accepting the reality of death.

vi. Burden
(Any information on cost or time to administer? Does the instrument impact
on the respondent? How long does a survey take to complete? Response rates?
Any problems with the missing data?)

Not addressed.

vii. Alternative
forms (What are the modes of administration? Alternatives? If an alternative
exists, provide what is know for each of the above categories)

i. Conceptual
and Measurement Model (Does the scale represent a single domain or do
model scales measure distinct domains? Is the variability of the scale
reported? If so, please document it. What is the intended level of measurement,
i.e. ordinal, interval, ratio or category?)

A 12-item interviewer
administered scale designed to gather data concerning hopefulness from
patients. Respondents were scored on a 1 to 4 Likert scale creating a
score range from 12 to 48. The HHI is composed of three dimensions: temporality
and future, positive readiness and expectancy, and interconnectedness.
Each domain contains four items.

iii. Validity
(How did they address content reliability? Any information on construct
related validity? Any information on criterion validity?)

Hope scores produced
a negative correlation with depression and positive relationship to self-esteem,
both significant at a p=0.001 level. The only variables that statistically
significantly affected the hope scores were education and the patterns
of worship. The more educated and those who attended worship more frequently
scored higher on the HHI. The HHI has not been used in a terminally-ill
population to date.

iv. Responsiveness
(Any information? Has the scale ever been used as an outcome measure?
If so, what populations?)

This study tested
hope in the family caregivers of terminally ill people as well as
hope in the terminally ill. In addition, it has tested hope on a population
of community persons, family member in a surgical waiting room and hospital
patients. Hope scores decreased in the hospital group that had increase
depression. Those with higher self-esteem scores scored higher on the
HHI. Therefore, the authors concluded that pastoral caregivers may increase
hopefulness by encouraging self-esteem.

v. Interpretability
(What populations has it been applied to? Is the score translated into
a clinically relevant event? Does the score predict outcome events?)

Used in a broad
clinical setting and in a terminally-ill population. No significant variation
in scores based on age, gender, marital stature, or religious background.

vi. Burden
(Any information on cost or time to administer? Does the instrument impact
on the respondent? How long does a survey take to complete? Response rates?
Any problems with the missing data?)

Especially useful
in the chronically- and terminally-ill populations because it is short
and easy to administer. It is good for respondents with limited stamina
or concentration.

vii. Alternative
forms (What are the modes of administration? Alternatives? If an alternative
exists, provide what is know for each of the above categories)

The six highlighted
instruments are all valuable tools in this work. The Spiritual Well-Being
Scale is excellent to assess spiritual and religious commitment in a person's
life. The Spiritual Perspective Scale similarly assesses the importance
of spirituality in a person's life, although it does not subdivide the
religious and spiritual domains as the former scale does. The SPS however
was used in a terminal population. The SWB would need to be tested in
this population.

The Meaning in
Life Scale is an excellent, easily administered scale, used to assess
patients' views on how worthy their life is. It was tested in a broad
group of patients including terminally-ill patients. The Death Attitude
Profile analyzes fears of death. The Death Transcendence Scale looks at
how people transcend death and can be used by the health care professional
in guiding patients through their last days. We therefore strongly recommend
the DTS. However, it must test with the terminally-ill population.

The Herth Hope
Index (HHI) is an excellent scale used to assess the patient's hopefulness.
Knowing that a person is hopeful guides the provider in determining ways
to sustain that hope. If a person lacks hope, the providers would need
to determine what aspects of their life could be drawn upon in order to
ignite hope within the dying patient. Given the correlation of low scores
on the HHI with depression and low self-esteem, the clinician should assess
the patient for depression and self-esteem. This scale has not been used
specifically in the dying population.

The drawback with
these scales is that only the MIL and the SPS have been used in a terminally
population. None of the studies used the scales to measure the effectiveness
of an intervention. Practically, one needs to have a scale which is short,
easy to answer and gives information regarding the quality of care given
to the dying patient with regard to their spiritual needs. Each of the
above instruments addresses some of these aspects.

We recommend that
we incorporate questions from the following instruments and form a composite,
shorter scale which would then be tested in the dying population:

Spiritual Well-Being
Scale
The Death Transcendence Scale
Herth Hope Scale
The Meaning of Life Scale

In additions we
would recommend adding specific questions regarding how well the patient's
spiritual needs are being met. For example: does someone listen to your
faith, your pain, your hope; was a chaplain referral made, if appropriate?

VII. Priorities
for Future Research

A. We need an
innovative instrument to assess spiritual needs in the dying population
which incorporates the concepts of death transcendence, spiritual and
religious well-being, hopefulness, as well as assess how well those needs
are being met.

B. We need to
use these instruments to test whether specific interventions (for example,
referral to a chaplain, increased attentiveness to a patient's belief)
improves their spiritual well-being, increases their hopefulness, and
enhances their meaning in life.

This
web site is published by the Center for Gerontology and Health Care Research,
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Dr. Joan Teno or contact her at Brown Medical School, Box G-HLL, Providence,
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e-mail the webmaster. Last
edited February 17, 2004.